My thoughts as a follow up to What about Us?

Hey everyone I know I wrote a blog yesterday that may have caused waves among the Rare Disease Community…

Do I regret it?? ABSOLUTELY NOT!!

Will I stop talking about it?? If you think YES, you don’t know me by now!

I have been thinking more about this today. I am not against anyone at all! I am not against that organizations have said that 50% of Rare Disease Patients are children.

I just want to not be forgotten. I also want to make sure that in our community there isn’t a feeling of separation.

I know we don’t discuss this often. I FEEL WE NEED TO AS A COMMUNITY!

Why shouldn’t we discuss this as a Rare Disease Community?

Why should I or anyone else be afraid to discuss this or feel sorry if we bring up an adult that has a rare disease?

I really have been thinking about this so much lately. I guess partly because as an adult with Sarcoidosis, Sjogren’s, and Parkinson’s I shouldn’t be ashamed. I am not saying anyone has made me feel this way personally, but I always have felt that this has been the elephant in the room.

I am not here to pull apart the Rare Disease community. I am here to bring the community together. If 50% of the rare disease community are children the other 50% are adults. We are all part of the community! I never had a thought on my mind that I was advocating for a child or an adult. I was advocating for the 30 million rare disease patients.

What actually had me write the blog yesterday was not just seeing the Today Show spot yesterday morning but also just laying here as usual in so much pain and thinking how much as an adult patient people don’t realize what we go through also. Also being told by some TV and newspapers and I quote “That there isn’t an interest in knowing about an adult patient.” Are you kidding me??? Also when interviewed I have been asked on multiple occasions “How many Children have your disease?”

So then I think.. What are we doing as a Rare Disease Community to help raise Awareness for adults with Rare Diseases? I realized NOT ENOUGH!

It is not fair for anyone to have a rare disease! I know life isn’t “FAIR.” But to be pushed away from everyone and then to feel like this is a taboo subject is ridiculous.

We as a community shouldn’t have any taboo subjects!

I really started thinking of all of the conferences, all of the government officials I have talked to, all of the rare disease community events, and also all of the television spots about rare diseases we mainly hear the numbers of children. Not that it is wrong, but what about us as an adult community.

I have been thinking about this for months. I decided to speak up now because with my health getting tougher to deal with and with so much to look forward to like moving forward as an organization President and also on a personal level. Knowing that I most likely won’t see a cure for any of my diseases is really so tough to get through my mind.

I am not here to make you feel sorry about me at all.

I am just talking about how I feel as an adult rare disease patient.

I don’t know how it is to be a rare disease parent and hopefully never will.

I do know how hard it is as a patient and do know hard it is on my family and worrying if I may pass it down to my daughter since we aren’t sure if it is genetic or not yet! I also understand on how hard it is to raise a family on a very limited budget due to my disease. I also know what it is like to see the ones you love worry everyday about me!

I also know what it is like to be looked at like there is nothing wrong with you! To be told you look great! To be drug tested when I go to the hospital! To be told there is nothing wrong from emergency room doctors!

The worse parts of these diseases are:

To be looked at from people you know and think that I am faking it!

To be worried what people think of you!

To be told by specialists that there is nothing else we can do for you!

To be in pain EVERY SINGLE DAY!!

I am an adult patient advocate!

I am an adult rare disease patient first and foremost!

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Author: fjr311

Frank Rivera-
Founder/President- Sarcoidosis of Long Island
Founder/President- RareNY
Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis to raise awareness for Sarcoidosis in the government sector. He has also spoke at two Congressional briefings for Sarcoidosis.
Frank is a National Ambassador for Foundation for Sarcoidosis
Patient Ambassador for Illumina
Frank organized RareNY in 2016, to raise awareness for Rare Diseases in New York. He organized “A Day for Rare Diseases” in October 2016 in New York with Global Genes. The event raised awareness for all 7000+ rare diseases to the public.
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